How do you cope with being a special needs parent?
December 11, 2019 3:45 AM Subscribe
My kiddo has some mild special needs. He is improving, but I find myself finding it really hard to cope, and would love some suggestions.
I don't want to go too much into the special needs, but they are primarily speech/language based, and my child is 4. But this isn't a question about him -- it's about me.
My main difficulties are:
1. Uncertainty. Will this get better? Will this not? Will he thrive in a regular school? Will he ever tell me a story? I think if I had a firmer diagnosis with a prognosis this might be better -- but we're still in the maybe/maybe not zone.
2. Am I doing enough? We have therapists, but I am always trying to spend every second of my time with him doing something that push forward his development. It is exhausting and stressful and I find I haven't enjoyed any of my 1:1 time with him for a long time. (I try REALLY HARD to make this fun -- almost always learning through playing, and I try hard not to show my anxiety though I can't say he doesn't pick it up.) My parents were visiting us recently and they said that they could feel my stress levels through the roof about this.
3. Over-research. This leads to me spending hours every night researching new activities/new therapists/approaches/academic articles. This is exhausting, and it really bothers my husband, because talking about this eats up time that is supposed to be nice. (My husband btw does not think this is a big deal -- I want to agree with him, but he is really optimistic person in general and if it were up to him, we would do nothing at all. He feels that we overdiagnose kids who are just on their own path.)
4. Competition. My kiddo is noticeably behind other kids. He is doing great, and if it's just him, I can be proud of how far he's come. But this is totally different when we're around his peers. I have a lot of friends with kids, and we have a lot of playdates - I now find these awful because all I do is compare. My kid has a good time and enjoys his friends a lot, and I think it's good for him to be around typically developing kids, but it is painful. And my friends often tell stories about their kids that unwittingly hurt my feelings ("Amelia told me this crazy story about a planet in a far away world with day glo pirates . . .")
5. This also crazily makes it even hard to be with my own younger kiddo who is typically developing and catching up with her sibling. She is so delightful, but it is also upsetting. I spend less time with her because (see above) always trying to give 1:1 with my son.
6. I read too much into everything. When my kid is badly behaved, I think it's another sign of a disorder (rather than kid bad behavior.) He has lots of friends, great, but he can sometimes be inappropriate/rude with strangers (even poking them when he's tired) and this freaks me out even though it doesn't happen very often so I overreact.
I know a lot of this is about me being a perfectionist. I know that this is about me having an idea of what a person should be (I'm not proud of this.) I had PPD for well over a year, and I blame myself for a lot of this. I have done some therapy which has revealed the roots of this, but I'm still struggling. Maybe I should continue, maybe I need drugs, who knows? But it is sucking a lot of my joy out of being a parent (and inadvertently, my husband's experience.)
Would love personal stories, ideas for books to read, ways to cope, etc. that can help me accept the situation and work on it without it making me so sad.
I don't want to go too much into the special needs, but they are primarily speech/language based, and my child is 4. But this isn't a question about him -- it's about me.
My main difficulties are:
1. Uncertainty. Will this get better? Will this not? Will he thrive in a regular school? Will he ever tell me a story? I think if I had a firmer diagnosis with a prognosis this might be better -- but we're still in the maybe/maybe not zone.
2. Am I doing enough? We have therapists, but I am always trying to spend every second of my time with him doing something that push forward his development. It is exhausting and stressful and I find I haven't enjoyed any of my 1:1 time with him for a long time. (I try REALLY HARD to make this fun -- almost always learning through playing, and I try hard not to show my anxiety though I can't say he doesn't pick it up.) My parents were visiting us recently and they said that they could feel my stress levels through the roof about this.
3. Over-research. This leads to me spending hours every night researching new activities/new therapists/approaches/academic articles. This is exhausting, and it really bothers my husband, because talking about this eats up time that is supposed to be nice. (My husband btw does not think this is a big deal -- I want to agree with him, but he is really optimistic person in general and if it were up to him, we would do nothing at all. He feels that we overdiagnose kids who are just on their own path.)
4. Competition. My kiddo is noticeably behind other kids. He is doing great, and if it's just him, I can be proud of how far he's come. But this is totally different when we're around his peers. I have a lot of friends with kids, and we have a lot of playdates - I now find these awful because all I do is compare. My kid has a good time and enjoys his friends a lot, and I think it's good for him to be around typically developing kids, but it is painful. And my friends often tell stories about their kids that unwittingly hurt my feelings ("Amelia told me this crazy story about a planet in a far away world with day glo pirates . . .")
5. This also crazily makes it even hard to be with my own younger kiddo who is typically developing and catching up with her sibling. She is so delightful, but it is also upsetting. I spend less time with her because (see above) always trying to give 1:1 with my son.
6. I read too much into everything. When my kid is badly behaved, I think it's another sign of a disorder (rather than kid bad behavior.) He has lots of friends, great, but he can sometimes be inappropriate/rude with strangers (even poking them when he's tired) and this freaks me out even though it doesn't happen very often so I overreact.
I know a lot of this is about me being a perfectionist. I know that this is about me having an idea of what a person should be (I'm not proud of this.) I had PPD for well over a year, and I blame myself for a lot of this. I have done some therapy which has revealed the roots of this, but I'm still struggling. Maybe I should continue, maybe I need drugs, who knows? But it is sucking a lot of my joy out of being a parent (and inadvertently, my husband's experience.)
Would love personal stories, ideas for books to read, ways to cope, etc. that can help me accept the situation and work on it without it making me so sad.
We've been lucky in that all three out of four kids in our immediate neighborhood have various special needs so we've been able to be open about our struggles and talk about what we do for our kids to help them. My kid plays with other kids who are typically developing as well so his experience with other kids is that there's diversity in development.
If your kid is in some sort of school or daycare, perhaps reaching out to other parents of kids with special needs would be a good thing for you. There are other parents who are struggling too.
Sending hugs in your direction.
posted by sciencegeek at 4:39 AM on December 11, 2019 [3 favorites]
If your kid is in some sort of school or daycare, perhaps reaching out to other parents of kids with special needs would be a good thing for you. There are other parents who are struggling too.
Sending hugs in your direction.
posted by sciencegeek at 4:39 AM on December 11, 2019 [3 favorites]
DrMsEld is a child psychologist. She sees kids and diagnoses them, or doesn't, in the daily. We have a friend who has a kid that is having serious issues. When they finally asked her for a professional opinion she, in a nutshell, said step zero is to get an evaluation by a licensed clinical psychologist (not her for ethical reasons obviously). I'm not sure they have yet but it concerns her because early intervention (doubly so with speech issues which are especially time sensitive developmentally) is so often key. So just make sure you have that base covered, and it sounds like you do, and keep doing your best. Me saying more would be speaking out of turn.
I'm sorry, I can't imagine how hard this is. If you want to memail I could try to relay any questions from you to DrMsEld. She's very research (not woo) driven and, well, great at what she does. But I'm biased....
posted by RolandOfEld at 4:55 AM on December 11, 2019
I'm sorry, I can't imagine how hard this is. If you want to memail I could try to relay any questions from you to DrMsEld. She's very research (not woo) driven and, well, great at what she does. But I'm biased....
posted by RolandOfEld at 4:55 AM on December 11, 2019
I'm a sibling of a person with special needs, not a parent, but I hope my limited experience will be helpful. Please ignore if not!
My advice is to give yourself plenty of breaks (i.e., arrange for routine babysitters or respite care for your special needs child). This helps in three areas: (1) Helps keep you from being all-consumed by your parent-to-a-special-needs-child role, giving you bandwidth for other thoughts/worries/concerns; (2) Keeps you refreshed, which is key to avoiding caretaker burnout; and (3) Gives you more time with your other child, which is absolutely key for that kid's healthy mental development.
posted by shb at 5:00 AM on December 11, 2019 [2 favorites]
My advice is to give yourself plenty of breaks (i.e., arrange for routine babysitters or respite care for your special needs child). This helps in three areas: (1) Helps keep you from being all-consumed by your parent-to-a-special-needs-child role, giving you bandwidth for other thoughts/worries/concerns; (2) Keeps you refreshed, which is key to avoiding caretaker burnout; and (3) Gives you more time with your other child, which is absolutely key for that kid's healthy mental development.
posted by shb at 5:00 AM on December 11, 2019 [2 favorites]
I’m not a parent of a child with special needs, but my sister is a parent of two, now adults, who live at home. One thing that helps her is connecting with parents in the same boat. One of her kids is in a group for special needs adults, and she appreciates the other moms a lot.
Also, this essay, An Open Letter to My Newly Diagnosed Autistic Son, from McSweeney’s, is lovely.
posted by FencingGal at 5:39 AM on December 11, 2019 [3 favorites]
Also, this essay, An Open Letter to My Newly Diagnosed Autistic Son, from McSweeney’s, is lovely.
posted by FencingGal at 5:39 AM on December 11, 2019 [3 favorites]
My daughter had a lot of special needs as an infant/toddler due to prematurity and while many have resolved, I will wonder every day for the rest of my life if every obstacle that she faces is related to my body's failure to carry her to term. It is exhausting. We are currently dealing with some emotional/behavioral issues and I did have to go back to therapy for myself and restart meds so that I can be the grown up in the room. I think that would be a good idea for you too. It's hard enough to separate yourself from your children, especially an oldest child, especially when there are special needs involved and there's been a legitimate reason to be hypervigilant in a way you don't have to be with a more typically developing child.
Therapy is helping me resolve how much is my "fault" and how much is my job (two different things) and figure out how to accept the unknowable future. It's not an easy path. You deserve the time and space to do that for yourself, even if you have to convince yourself that you're doing it for him, which is how I finally was able to reach out.
posted by peanut_mcgillicuty at 5:44 AM on December 11, 2019 [6 favorites]
Therapy is helping me resolve how much is my "fault" and how much is my job (two different things) and figure out how to accept the unknowable future. It's not an easy path. You deserve the time and space to do that for yourself, even if you have to convince yourself that you're doing it for him, which is how I finally was able to reach out.
posted by peanut_mcgillicuty at 5:44 AM on December 11, 2019 [6 favorites]
My kid has lots of physical and cognitive disabilities, and despite the differences in his diagnoses/health issues to your kid's, I feel like I can identify with almost everything you've posted. The uncertainties especially really suck SO MUCH. I don't think I've found anything to help with them. Even when we've gotten concrete diagnoses for E's specific disabilities, it ultimately doesn't help with my uncertainties, as the goal posts just move. (Example: E has epilepsy. Docs prescribe meds which help initially, but as E grows, his EEG changes and shows a more specific type of intractable epilepsy. Argh.) BUT, I do think it helps me to be able to say E has X, so we can try X1-X5 strategies to work with it. This video, Two Kids. Two Undiagnosed Disabilities (from The Atlantic) is parent-centric and helped me feel a bit better about my worries regarding uncertainties. I found it a little chipperish at the end but still overall helpful.
Because I also struggle with all these things you've mentioned, I don't know what else to tell you, except that it sounds like you are doing a really great job. (SO helpful. I know.) It is such a different path, and usually thinking about that helps me get through bad/sad brain moments. This is our family and it's how we work, I try to tell myself. I wish we were brave enough to try for a second kid, because I think E would love having a sibling. I know there are a lot of divided opinions on how that shakes out (here and elsewhere) but I think it sounds like you are doing a good job there. Maybe you can put some of the research/uncertainty energy into figuring out how to increase 1:1 time with your typically developing kid and thus burn off some of that worry/guilt. Sometimes I'm able to get past the research/uncertainty/worries/guilt about various E things by reminding myself that there is just not enough time in the day and I could spend that time better doing self-care, playing with E or giving my husband a needed break, or figuring out ways for us to take a vacation, staycation, or whatever. Basically, forcing myself out of the disability-focused loop. When I do take these breaks, I find I can handle dives into disability-centered research better.
I know that this is about me having an idea of what a person should be (I'm not proud of this.)
This is the worst and I totally have this problem too. It's pervasive and hard to shake. It's so hard to break out of modes of thinking you didn't realize you had. I'm doing some reading on social models of disability, and it is helping me a bit. I think therapy is an awesome choice and you should keep on. It's so good to get an outside perspective because even with empathetic friends it's hard not to feel isolated. Every special need is so damn special and individual and specific, you know?
Reading and listening recs: I try to find and follow special needs blogs and facebook groups that are close to my experience. Love That Max has been super helpful for me, plus the author has a weekly(?) special needs blog roundup where other bloggers can submit links to posts they've written, which is nice but definitely labor intensive for new blog discovery. I read a lot of books written by parents of kids with special needs. Some have been helpful. Some have been agonizing (which, apparently, is helpful to me sometimes). Some have been unhelpful and I have felt no problem ditching them. There was a special needs parenting podcast I followed for a bit called Unexceptional Moms. It was a bit religion-heavy for my tastes but occasionally helpful. I also have found it helpful to follow certain podcasts that deal with E's particular disabilities, such as Laura Mize's Teach Me To Talk. Sometimes I go a while without listening to them, and that's fine.
I also have a pamphlet from PACER called "I Wish I Knew Then What I Know Now" with parental perspectives now that their kids are a bit older. One quote that stuck with me was "I wish I had just given myself a break and just breathed." wrt worrying about whether or not the parent was doing enough for their kid. Re the pamphlet as a whole: some of it is relateable, some not, but it's always such a good feeling to read about someone who has/had a similar experience to mine. So many of my friends and I were pregnant at the same time, and I have difficulty connecting with them since our experiences have been so different. (I recognize this is mostly on me! Ha.)*
Sorry this is so long and disorganized! I hope it is helpful. Feel free to memail me.
*You've probably already explored this stuff, and I don't know your location, but I'm in MN and we have the PACER Center in Minneapolis which provides a ton of awesome PDFs, printed docs, and other resources for parents of kids with disabilities. If you're in MN they are almost entirely free. If you're not in MN, check out your state's resources. The reason I bring this up is because despite feeling like I never shut off worrying about my kid's needs (and alternately feeling like I wasn't doing enough), I was kind of late to the PACER party and they have some good resources there for parents that would've definitely helped me at an earlier stage (E is now 5 yo).
posted by pepper bird at 6:45 AM on December 11, 2019 [1 favorite]
Because I also struggle with all these things you've mentioned, I don't know what else to tell you, except that it sounds like you are doing a really great job. (SO helpful. I know.) It is such a different path, and usually thinking about that helps me get through bad/sad brain moments. This is our family and it's how we work, I try to tell myself. I wish we were brave enough to try for a second kid, because I think E would love having a sibling. I know there are a lot of divided opinions on how that shakes out (here and elsewhere) but I think it sounds like you are doing a good job there. Maybe you can put some of the research/uncertainty energy into figuring out how to increase 1:1 time with your typically developing kid and thus burn off some of that worry/guilt. Sometimes I'm able to get past the research/uncertainty/worries/guilt about various E things by reminding myself that there is just not enough time in the day and I could spend that time better doing self-care, playing with E or giving my husband a needed break, or figuring out ways for us to take a vacation, staycation, or whatever. Basically, forcing myself out of the disability-focused loop. When I do take these breaks, I find I can handle dives into disability-centered research better.
I know that this is about me having an idea of what a person should be (I'm not proud of this.)
This is the worst and I totally have this problem too. It's pervasive and hard to shake. It's so hard to break out of modes of thinking you didn't realize you had. I'm doing some reading on social models of disability, and it is helping me a bit. I think therapy is an awesome choice and you should keep on. It's so good to get an outside perspective because even with empathetic friends it's hard not to feel isolated. Every special need is so damn special and individual and specific, you know?
Reading and listening recs: I try to find and follow special needs blogs and facebook groups that are close to my experience. Love That Max has been super helpful for me, plus the author has a weekly(?) special needs blog roundup where other bloggers can submit links to posts they've written, which is nice but definitely labor intensive for new blog discovery. I read a lot of books written by parents of kids with special needs. Some have been helpful. Some have been agonizing (which, apparently, is helpful to me sometimes). Some have been unhelpful and I have felt no problem ditching them. There was a special needs parenting podcast I followed for a bit called Unexceptional Moms. It was a bit religion-heavy for my tastes but occasionally helpful. I also have found it helpful to follow certain podcasts that deal with E's particular disabilities, such as Laura Mize's Teach Me To Talk. Sometimes I go a while without listening to them, and that's fine.
I also have a pamphlet from PACER called "I Wish I Knew Then What I Know Now" with parental perspectives now that their kids are a bit older. One quote that stuck with me was "I wish I had just given myself a break and just breathed." wrt worrying about whether or not the parent was doing enough for their kid. Re the pamphlet as a whole: some of it is relateable, some not, but it's always such a good feeling to read about someone who has/had a similar experience to mine. So many of my friends and I were pregnant at the same time, and I have difficulty connecting with them since our experiences have been so different. (I recognize this is mostly on me! Ha.)*
Sorry this is so long and disorganized! I hope it is helpful. Feel free to memail me.
*You've probably already explored this stuff, and I don't know your location, but I'm in MN and we have the PACER Center in Minneapolis which provides a ton of awesome PDFs, printed docs, and other resources for parents of kids with disabilities. If you're in MN they are almost entirely free. If you're not in MN, check out your state's resources. The reason I bring this up is because despite feeling like I never shut off worrying about my kid's needs (and alternately feeling like I wasn't doing enough), I was kind of late to the PACER party and they have some good resources there for parents that would've definitely helped me at an earlier stage (E is now 5 yo).
posted by pepper bird at 6:45 AM on December 11, 2019 [1 favorite]
Hi there :-) I send a big hug. I have two small children- little boys aged 3 and 4...” with special needs (mild) and sensory issues and yeah, it’s not easy. I’m about to go to the playground with them so I can’t type out a longer answer but I will come back to write more.
But I’ve felt a lot of the way you’re feeling and sometimes I think I’ll end up having a regular relationship with them and they’ll be independent and have relationships and other times I think they’ll live with me forever. I don’t know how school will go. We’re holding our older boy back a bit longer.
I’m afraid for when they get teased in the future or get hurt.
For therapies we do occupational therapy and we just started equine lessons that are therapeutic.
I’ll get them swimming lessons in the new year.
I think with those therapies, and by choosing horses particularly I think I’m making the most of pre 6 years old brain elasticity.
And whatever happens after that in school I know I made the most of their preschool early years to get them ready.
The horse lessons are also therapeutic to me. I like going to the stables and walking around.. I recommend it highly if you can find a way.
posted by catspajammies at 7:26 AM on December 11, 2019 [2 favorites]
But I’ve felt a lot of the way you’re feeling and sometimes I think I’ll end up having a regular relationship with them and they’ll be independent and have relationships and other times I think they’ll live with me forever. I don’t know how school will go. We’re holding our older boy back a bit longer.
I’m afraid for when they get teased in the future or get hurt.
For therapies we do occupational therapy and we just started equine lessons that are therapeutic.
I’ll get them swimming lessons in the new year.
I think with those therapies, and by choosing horses particularly I think I’m making the most of pre 6 years old brain elasticity.
And whatever happens after that in school I know I made the most of their preschool early years to get them ready.
The horse lessons are also therapeutic to me. I like going to the stables and walking around.. I recommend it highly if you can find a way.
posted by catspajammies at 7:26 AM on December 11, 2019 [2 favorites]
From a member who would like to remain anonymous:
So many hugs. All special needs parents have been there. The years before school are the WORST for uncertainty -- there's just so much you don't know and can't know yet. One thing that really, really helps is getting to know other special needs parents whose kids are older. Right now you're adrift in a lifeboat by yourself, having fallen off the typically-developing cruise ship and all the camaraderie and support you had there. But there's actually an atypically-developing cruise ship RIGHT NEAR BY just waiting to pick up your life boat. Meeting other parents with older children helped me see what my family could look like, all the beautiful different ways families with atypically-developing children work. Part of what's so hard is that you thought your family would look one way, that you have lots of models for; now it looks another way, and you don't have many models. Get those models! Now that my atypically-developing child is in junior high, we meet preschoolers who have just gotten the same diagnosis (my youngest is in preschool) and are floundering, like we were, and we're able to say, "Oh, yes, we've been there, we've done this, you can make it!" and they're able to see our absolutely delightful child who thrives in his unique way and how our tight-knit family is wonderfully itself and we can't imagine it any other way.posted by taz at 8:16 AM on December 11, 2019 [14 favorites]
It was such a help to me to see other moms who were relaxed, confident, and happy, when I was struggling with my child's diagnosis, floundering, not sure where we would end up. And now I'm one of the moms on the atypical cruise ship who's relaxed, confident, happy, and able to handle things as they come. I've been thrown so many loops that when I get a new loop I'm just like, "Must be Wednesday, let's get this dealt with." The only way out is through! But other special needs parents can help you get through, both because they ARE the light at the end of the tunnel, the models of what your life will be like, and because they can hook you up with infinite resources you didn't know existed.
Definitely continue therapy. This is a hard time and being able to talk to a therapist will help a lot. Look for a community of parents -- there are usually facebook groups for "$Location Parents of Special Needs Kids" (and often for your specific diagnosis as well). Try a few; they have different vibes and you'll want to find a good fit. ("Warrior Mama!" type groups that spend a lot of time valorizing how we're the toughest moms in the world are really not for me and I nope right out of any groups that are big on woo, especially anti-vaxxing.) Try to find some other moms in your existing network of friends who have older kids with special needs so you can see that future and have that support.
If it were me, I would limit my researching to one or two nights a week -- it sounds like it's intensifying (rather than reducing) your anxiety, as well as damaging your relationship with your husband. So Mondays and Thursdays you dive into research, for example, but the other nights of the week you bingewatch Netflix or bake cookies as a family or do puzzles or read novels.
Are you doing enough? You're doing MORE than enough. Do a little less! Try to find some time to just enjoy your kid how he is, without worrying about pushing him forward. No matter what his diagnosis is or isn't, he's an amazing tiny person with his own way of looking at the world, and that is worth enjoying and treasuring, here and now, in this moment.
If I were doing it over, the one thing I wish I had done a lot sooner is choosing a social, creative outlet for myself to participate in at least twice a month. Take an art class, go to a knitting meetup, just SOMETHING where you're getting out of the house, as a full-grown adult -- not a wife, not a mom, just YOU. The intensity of the early years of my child's needs meant I ended up really subsumed into my children because it was literally the only thing I did, to the point where I lost myself AND I got really boring. (Like, how do I even conversationate? I can't talk about my kids non-stop but I have nothing else to talk about ...) And I think it was bad for my kids, because all my creative energy was being dumped on them and it was INTENSE. I started doing a weekly class that has nothing to do with anything except that I get to go be creative with other adults, and it's been really, really good for me. It gets me out of my head and lets me be a person outside of my family, which makes me a better, calmer, more centered parent.
I'm not a parent of a child with speech/language issues, but I am someone who works with tons of these kids clinically and has counseled thousands of parents about these exact issues.
The most important thing I will tell you is all of these feelings and anxieties are completely normal. Pretty much every caring parent I have worked with who has child with speech/language disorders asks themselves the same questions and has the same worries. You ARE doing enough, you ARE loving your other child enough, there is no magic bullet you will find by googling endlessly, and progress can be slow. But there WILL be progress.
My best advice to you is to find support for yourself. Facing this is tough on the kid, but it is also very tough on the parent. There are tons of support groups out there full of parents just like yourself. You can find them online via facebook or similar if that is more your speed, or you can talk to one of your therapists or clinicians about local, in-person groups. Just being able to vent and feel your feelings with likeminded parents who understand can be hugely helpful.
posted by Lutoslawski at 8:52 AM on December 11, 2019 [2 favorites]
The most important thing I will tell you is all of these feelings and anxieties are completely normal. Pretty much every caring parent I have worked with who has child with speech/language disorders asks themselves the same questions and has the same worries. You ARE doing enough, you ARE loving your other child enough, there is no magic bullet you will find by googling endlessly, and progress can be slow. But there WILL be progress.
My best advice to you is to find support for yourself. Facing this is tough on the kid, but it is also very tough on the parent. There are tons of support groups out there full of parents just like yourself. You can find them online via facebook or similar if that is more your speed, or you can talk to one of your therapists or clinicians about local, in-person groups. Just being able to vent and feel your feelings with likeminded parents who understand can be hugely helpful.
posted by Lutoslawski at 8:52 AM on December 11, 2019 [2 favorites]
The only thing I can add to these already excellent recommendations is advice not to push kiddo to be able to achieve X milestone by Y date for no better reason than that his similarly aged peers all seem to be on track toward hitting it.
Every kid develops at their own rate and with their own weird set of priorities; every kid needs however much time it takes to bed in each layer of development before starting serious work on the next one, and every kid will do less well than they could if they're constantly being told that they have to get their buildings put up before their foundations are properly squared away.
If you pace the learning challenges your kid is faced with to his actual state of development - preferably as assessed by compassionate professionals skilled in the art of doing so - rather than some idea of what's supposed to be "normal" for his age, then he won't need to spend his whole life feeling like he's trying to catch up with a permanently unattainable set of educational goals.
Instead, he'll be free to learn what he can, as he can. And when his normal becomes living in a state where all the stuff his own unique brain is busily integrating is given the time it needs to sort itself out in its own way, then he will occasionally completely astonish you by displaying totally unanticipated skills that are absolutely not "normal" for his age.
Also, play is underrated. The more of that we get an opportunity to do, the healthier we turn out. And that's a principle that applies to parents at least as much as to our kids.
posted by flabdablet at 9:30 AM on December 11, 2019 [5 favorites]
Every kid develops at their own rate and with their own weird set of priorities; every kid needs however much time it takes to bed in each layer of development before starting serious work on the next one, and every kid will do less well than they could if they're constantly being told that they have to get their buildings put up before their foundations are properly squared away.
If you pace the learning challenges your kid is faced with to his actual state of development - preferably as assessed by compassionate professionals skilled in the art of doing so - rather than some idea of what's supposed to be "normal" for his age, then he won't need to spend his whole life feeling like he's trying to catch up with a permanently unattainable set of educational goals.
Instead, he'll be free to learn what he can, as he can. And when his normal becomes living in a state where all the stuff his own unique brain is busily integrating is given the time it needs to sort itself out in its own way, then he will occasionally completely astonish you by displaying totally unanticipated skills that are absolutely not "normal" for his age.
Also, play is underrated. The more of that we get an opportunity to do, the healthier we turn out. And that's a principle that applies to parents at least as much as to our kids.
posted by flabdablet at 9:30 AM on December 11, 2019 [5 favorites]
he won't need to spend his whole life feeling like he's trying to catch up with a permanently unattainable set of educational goals
Also, critically: neither will you.
posted by flabdablet at 9:37 AM on December 11, 2019 [1 favorite]
Also, critically: neither will you.
posted by flabdablet at 9:37 AM on December 11, 2019 [1 favorite]
You have to find other parents of kids with special needs, and I found I needed other parents with the same sense of humor. It made a world of difference. It was very alienating to go to all the various support groups and not feel like they were relevant to me and I had to settle for on-line friends for a while, but eventually found my people nearby.
Everything you've said sounds very normal -- not that that makes it any easier, I'm sure, but you're definitely not alone, including the dad (presuming you're the mom) not being as stressed-out as you are. Sorry.
Competition
You wouldn't believe how often I flip off my Facebook feed. Parents of NT kids don't mean to be cruel but Jesus Christ, they sure can be. You have to just leap off that competitive ladder and recognize that it's no longer relevant to your family.
I spend less time with her because (see above) always trying to give 1:1 with my son.
When she's older, she might benefit from sibshops or other support groups. Here's one in Seattle, as an example.
posted by The corpse in the library at 1:10 PM on December 11, 2019 [1 favorite]
Everything you've said sounds very normal -- not that that makes it any easier, I'm sure, but you're definitely not alone, including the dad (presuming you're the mom) not being as stressed-out as you are. Sorry.
Competition
You wouldn't believe how often I flip off my Facebook feed. Parents of NT kids don't mean to be cruel but Jesus Christ, they sure can be. You have to just leap off that competitive ladder and recognize that it's no longer relevant to your family.
I spend less time with her because (see above) always trying to give 1:1 with my son.
When she's older, she might benefit from sibshops or other support groups. Here's one in Seattle, as an example.
posted by The corpse in the library at 1:10 PM on December 11, 2019 [1 favorite]
You might find the "Too Peas in a Podcast" podcast helpful or resonant - "Listen to Mandy and Kate laugh (a lot) and cry as they chat to each other and friends about parenting multiples with disabilities and special needs." By way of example of their vibe, one of their new pieces of merch is a "F*ck You Milestones" t-shirt.
posted by fever-trees at 4:37 PM on December 11, 2019 [2 favorites]
posted by fever-trees at 4:37 PM on December 11, 2019 [2 favorites]
I know that you are anonymous, but if you want to MeMail to talk, I would be happy to do so. I've worked in the special needs field with kids for 35 years and your concerns are ones I talk with to parents every week.
I don't have all the answers, but I hope I can help.
posted by ITravelMontana at 4:43 PM on December 11, 2019 [1 favorite]
I don't have all the answers, but I hope I can help.
posted by ITravelMontana at 4:43 PM on December 11, 2019 [1 favorite]
Hi! Mum of a kid with autism and moderate behavioural difficulties, you've had some awesome advice already - here are my thoughts fwiw. I’ve tried to be practical but sound a bit harsh sometimes – so apologies in advance for this!
1. Uncertainty. Will this get better? Will this not? Will he thrive in a regular school? Will he ever tell me a story? I think if I had a firmer diagnosis with a prognosis this might be better -- but we're still in the maybe/maybe not zone.
This is such a BIG problem and I suffer from it too. I'm always looking ahead to the next milestone and assuming my daughter will gradually get more ‘normal’. I’ve found it useful to assume the worst situation in terms of practical preparation – looking into (getting) special schools, support, money and benefits, what could happen if you had to leave your job, if your little one will never talk, when he grows up etc. You’ll then be prepared if all this does happen, and will be in a mindset of ‘well, things aren’t normal and will never be, so I’m going to focus on the most abnormal'. It's strangely bracing.
2. Am I doing enough? We have therapists, but I am always trying to spend every second of my time with him doing something that push forward his development. It is exhausting and stressful and I find I haven't enjoyed any of my 1:1 time with him for a long time. (I try REALLY HARD to make this fun -- almost always learning through playing, and I try hard not to show my anxiety though I can't say he doesn't pick it up.) My parents were visiting us recently and they said that they could feel my stress levels through the roof about this.
Obviously you are, and I’m guessing you’re focusing on development because it’s hard to connect with your kid in other ways. (Forgive me if I’m wrong about this.) What I’ve found with my kid is that mental health is just as important, if not more, than development. I don’t want you to stress about his mental health either!! But giving him confidence and security will be great in helping him cope with everything society has to fling at him. Impossible for me to say 'don't stress out'! but it might relax you a bit to focus on mental health development, esp if its self care for both of you.
3. Over-research. This leads to me spending hours every night researching new activities/new therapists/approaches/academic articles. This is exhausting, and it really bothers my husband, because talking about this eats up time that is supposed to be nice. (My husband btw does not think this is a big deal -- I want to agree with him, but he is really optimistic person in general and if it were up to him, we would do nothing at all. He feels that we overdiagnose kids who are just on their own path.)
I love research 😊 you’re a bit all over the place right now because you haven’t got a diagnosis. Once you get one you can focus your effects and become a proper expert. Seriously, research is good. It’s good for parents to know all about their child’s diagnosis and how to deal with it and what resources are on offer and what school can do and what support is out there. I’ve always sent schools/paeds etc whole essays about my kid and they don’t seem to mind. (!)
4. Competition. My kiddo is noticeably behind other kids. He is doing great, and if it's just him, I can be proud of how far he's come. But this is totally different when we're around his peers. I have a lot of friends with kids, and we have a lot of playdates - I now find these awful because all I do is compare. My kid has a good time and enjoys his friends a lot, and I think it's good for him to be around typically developing kids, but it is painful. And my friends often tell stories about their kids that unwittingly hurt my feelings ("Amelia told me this crazy story about a planet in a far away world with day glo pirates . . .")
The worse thing about having a SN kid is how it isolates you from other parents. The mum friends I had have been super supportive, asked how my kid is doing, etc. BUT we have NOTHING in common anymore. The first time I spoke with a mum with a kid with needs similar to mine it was a total balm to my soul. Spend time with other SN kids and parents. Avoid the other playdates, if you can. And it's good for neuro kids to be around your son as well, and they are v. privileged to be his friend. But being around other SN kids will be good for him too.
5. This also crazily makes it even hard to be with my own younger kiddo who is typically developing and catching up with her sibling. She is so delightful, but it is also upsetting. I spend less time with her because (see above) always trying to give 1:1 with my son.
Having a SN sibling is a great way to learn about different ways of being a person, of dealing with the world, of caring and being useful. She’s learning all the time! But if she joins in with the 1:1 surely that will benefit all of you!
6. I read too much into everything. When my kid is badly behaved, I think it's another sign of a disorder (rather than kid bad behavior.) He has lots of friends, great, but he can sometimes be inappropriate/rude with strangers (even poking them when he's tired) and this freaks me out even though it doesn't happen very often so I overreact.
I do this too 😊 sometimes as an excuse to avoid chastising my kids because I am a terrible parent 😊 as you learn more about the SN and observe other SN you’ll get a better understanding of this I think. Also…. A very love-bomby, permissive parenting with consequences, not rewards or punishments, compromise, discussion, etc … works IMHO with neurotypical kids as well as SN ones. So, ideally, it doesn't matter of the behaviour is 'naughty' or not - you deal with it in the same way.
HTH! Please feel free to pm if you want to talk.
posted by low_horrible_immoral at 3:58 AM on December 12, 2019 [1 favorite]
1. Uncertainty. Will this get better? Will this not? Will he thrive in a regular school? Will he ever tell me a story? I think if I had a firmer diagnosis with a prognosis this might be better -- but we're still in the maybe/maybe not zone.
This is such a BIG problem and I suffer from it too. I'm always looking ahead to the next milestone and assuming my daughter will gradually get more ‘normal’. I’ve found it useful to assume the worst situation in terms of practical preparation – looking into (getting) special schools, support, money and benefits, what could happen if you had to leave your job, if your little one will never talk, when he grows up etc. You’ll then be prepared if all this does happen, and will be in a mindset of ‘well, things aren’t normal and will never be, so I’m going to focus on the most abnormal'. It's strangely bracing.
2. Am I doing enough? We have therapists, but I am always trying to spend every second of my time with him doing something that push forward his development. It is exhausting and stressful and I find I haven't enjoyed any of my 1:1 time with him for a long time. (I try REALLY HARD to make this fun -- almost always learning through playing, and I try hard not to show my anxiety though I can't say he doesn't pick it up.) My parents were visiting us recently and they said that they could feel my stress levels through the roof about this.
Obviously you are, and I’m guessing you’re focusing on development because it’s hard to connect with your kid in other ways. (Forgive me if I’m wrong about this.) What I’ve found with my kid is that mental health is just as important, if not more, than development. I don’t want you to stress about his mental health either!! But giving him confidence and security will be great in helping him cope with everything society has to fling at him. Impossible for me to say 'don't stress out'! but it might relax you a bit to focus on mental health development, esp if its self care for both of you.
3. Over-research. This leads to me spending hours every night researching new activities/new therapists/approaches/academic articles. This is exhausting, and it really bothers my husband, because talking about this eats up time that is supposed to be nice. (My husband btw does not think this is a big deal -- I want to agree with him, but he is really optimistic person in general and if it were up to him, we would do nothing at all. He feels that we overdiagnose kids who are just on their own path.)
I love research 😊 you’re a bit all over the place right now because you haven’t got a diagnosis. Once you get one you can focus your effects and become a proper expert. Seriously, research is good. It’s good for parents to know all about their child’s diagnosis and how to deal with it and what resources are on offer and what school can do and what support is out there. I’ve always sent schools/paeds etc whole essays about my kid and they don’t seem to mind. (!)
4. Competition. My kiddo is noticeably behind other kids. He is doing great, and if it's just him, I can be proud of how far he's come. But this is totally different when we're around his peers. I have a lot of friends with kids, and we have a lot of playdates - I now find these awful because all I do is compare. My kid has a good time and enjoys his friends a lot, and I think it's good for him to be around typically developing kids, but it is painful. And my friends often tell stories about their kids that unwittingly hurt my feelings ("Amelia told me this crazy story about a planet in a far away world with day glo pirates . . .")
The worse thing about having a SN kid is how it isolates you from other parents. The mum friends I had have been super supportive, asked how my kid is doing, etc. BUT we have NOTHING in common anymore. The first time I spoke with a mum with a kid with needs similar to mine it was a total balm to my soul. Spend time with other SN kids and parents. Avoid the other playdates, if you can. And it's good for neuro kids to be around your son as well, and they are v. privileged to be his friend. But being around other SN kids will be good for him too.
5. This also crazily makes it even hard to be with my own younger kiddo who is typically developing and catching up with her sibling. She is so delightful, but it is also upsetting. I spend less time with her because (see above) always trying to give 1:1 with my son.
Having a SN sibling is a great way to learn about different ways of being a person, of dealing with the world, of caring and being useful. She’s learning all the time! But if she joins in with the 1:1 surely that will benefit all of you!
6. I read too much into everything. When my kid is badly behaved, I think it's another sign of a disorder (rather than kid bad behavior.) He has lots of friends, great, but he can sometimes be inappropriate/rude with strangers (even poking them when he's tired) and this freaks me out even though it doesn't happen very often so I overreact.
I do this too 😊 sometimes as an excuse to avoid chastising my kids because I am a terrible parent 😊 as you learn more about the SN and observe other SN you’ll get a better understanding of this I think. Also…. A very love-bomby, permissive parenting with consequences, not rewards or punishments, compromise, discussion, etc … works IMHO with neurotypical kids as well as SN ones. So, ideally, it doesn't matter of the behaviour is 'naughty' or not - you deal with it in the same way.
HTH! Please feel free to pm if you want to talk.
posted by low_horrible_immoral at 3:58 AM on December 12, 2019 [1 favorite]
My daughter is on the spectrum and had a wide array of developmental and behavioral issues when she was your child’s age (delayed speech, public meltdowns due to noise or...blueberries...). I was her stay-at-home parent and daily caretaker until she was ~7.
(my apologies to everyone for the huge wall-o-text I’m about to spew...)
I can relate to a bunch of this - my wife was very very anxious about all of the issues that are stressing you out (the anguish when confronted with anything that might be considered a setback especially rings true), I was a lot less so, though still very concerned about her future prospects and her behavior relative to her peers.
I’ll address specific points below, but the thing that helped me the most by far was getting to know the other kids and parents at her special ed preschool. There were multiple substantial benefits:
- commiseration and shared concerns with other parents (a big one)
- peer comparison was much less of an issue, both because the other kids were not neurotypical, but also (and this was a big surprise to me) because of the wide variation in skills and deficits
- playdates with other special needs kids - the parents are relieved of a lot of anxiety and the kids are too (compared to socializing with kids developing at a more typical pace). My daughter’s first incidence of cooperative play was with a friend from pre-school when she was 4; the friend’s mom and I were both in tears.
To address other things specifically:
Uncertainty: this definitely blows, especially before you have enough distance to see some long term improvement and before you’ve had a chance to meet other, older kids and their parents. More experience and time will help this.
Fear of under-helping: This is a hard one, but while we did a lot of different kinds of therapies and early intervention (a recommendation heartily seconded), I didn’t go that far beyond how I personally tried to foster my older kids - I just tried to encourage strengths and shore up weaknesses. Due perhaps to laziness, I was not willing to work so hard that I didn’t enjoy the fabulous parts of having a kid that age. Main point is that his future is not all on you, and shouldn’t be. I encourage you to give yourself enough space to enjoy your 1-1 time, no matter the cost in being parent as teacher/therapist.
Over-research: All I can say here is that research didn’t help me or my wife enjoy our time with my girl more, and didn’t contribute anything but anxiety in the long term.
Competition: Addressed briefly above but even among peers that he seems way behind, there are hidden issues that are just as unique and stressful. The more I talked to other parents (especially of older kids) the more I realized how wide the variation of abilities was among younger kids, and how many many of the kids that had major issues in pre-school had developed to the point that their parents had to tell me that there was ever an issue.
I have a lot perspective to offer that I’ll be happy to share privately if you wish, but I will say that what helped me was to hope for the best and plan for not-the-best, realizing that my most dire concerns were unlikely to come to pass. Also therapies and interventions take time to work.
Good luck. You’ve got this.
posted by Calibandage at 8:06 PM on December 12, 2019
(my apologies to everyone for the huge wall-o-text I’m about to spew...)
I can relate to a bunch of this - my wife was very very anxious about all of the issues that are stressing you out (the anguish when confronted with anything that might be considered a setback especially rings true), I was a lot less so, though still very concerned about her future prospects and her behavior relative to her peers.
I’ll address specific points below, but the thing that helped me the most by far was getting to know the other kids and parents at her special ed preschool. There were multiple substantial benefits:
- commiseration and shared concerns with other parents (a big one)
- peer comparison was much less of an issue, both because the other kids were not neurotypical, but also (and this was a big surprise to me) because of the wide variation in skills and deficits
- playdates with other special needs kids - the parents are relieved of a lot of anxiety and the kids are too (compared to socializing with kids developing at a more typical pace). My daughter’s first incidence of cooperative play was with a friend from pre-school when she was 4; the friend’s mom and I were both in tears.
To address other things specifically:
Uncertainty: this definitely blows, especially before you have enough distance to see some long term improvement and before you’ve had a chance to meet other, older kids and their parents. More experience and time will help this.
Fear of under-helping: This is a hard one, but while we did a lot of different kinds of therapies and early intervention (a recommendation heartily seconded), I didn’t go that far beyond how I personally tried to foster my older kids - I just tried to encourage strengths and shore up weaknesses. Due perhaps to laziness, I was not willing to work so hard that I didn’t enjoy the fabulous parts of having a kid that age. Main point is that his future is not all on you, and shouldn’t be. I encourage you to give yourself enough space to enjoy your 1-1 time, no matter the cost in being parent as teacher/therapist.
Over-research: All I can say here is that research didn’t help me or my wife enjoy our time with my girl more, and didn’t contribute anything but anxiety in the long term.
Competition: Addressed briefly above but even among peers that he seems way behind, there are hidden issues that are just as unique and stressful. The more I talked to other parents (especially of older kids) the more I realized how wide the variation of abilities was among younger kids, and how many many of the kids that had major issues in pre-school had developed to the point that their parents had to tell me that there was ever an issue.
I have a lot perspective to offer that I’ll be happy to share privately if you wish, but I will say that what helped me was to hope for the best and plan for not-the-best, realizing that my most dire concerns were unlikely to come to pass. Also therapies and interventions take time to work.
Good luck. You’ve got this.
posted by Calibandage at 8:06 PM on December 12, 2019
My son is special needs, and the most helpful thing for me was when another mom with a child with the same special needs started a beer night for moms of kids with this specific special needs. We get DRUNK and it is therapeutic. The one thing we all agree on is that other mom's DO NOT GET IT. It helps to be in that space. Put down the research, find those people, have a beer.
posted by Toddles at 9:31 PM on December 12, 2019 [2 favorites]
posted by Toddles at 9:31 PM on December 12, 2019 [2 favorites]
I forgot to add in my comment - there's a great comedy-drama starring David Tennant and Jessica Hynes called There She Goes which is based on true experiences of a family dealing with the various issues surrounding an SN child. It dramatises the first few months after birth, and then we visit the family later when kiddo is eight or nine and how things have changed. It's fairly dark in places but fundamentally very heart warming and it was great, for me, to watch something that rang so true about SN. The trailer's here, it's probably streaming somewhere!
posted by low_horrible_immoral at 1:15 AM on December 13, 2019
posted by low_horrible_immoral at 1:15 AM on December 13, 2019
This thread is closed to new comments.
posted by taz (staff) at 3:45 AM on December 11, 2019 [10 favorites]